Monday, September 10, 2012

At 3:07 PM on July 30, 2012, our little girl, Alexa Marie, made her entrance into the world. It was not the first time. That happened when the surgeons worked on her on May 15, 2012.

At 33 weeks, 3 days, her birth date was earlier than we had hoped. However, in the end, I believe things happen for a reason.

July 2012 was the hottest month on record. One positive of bed rest was that I mostly escaped the heat. During this month, my amniotic fluid had been decreasing with each appointment. After my July 27, 2012 appointment, I was hospitalized after the Vanderbilt team read the ultrasound report; my amniotic fluid was too low. I was admitted to the hospital and administered intravenous therapy. I believe the doctors were trying to rule out dehydration as the cause of the decreasing amniotic fluid. However, when the nurses saw my veins, they knew I was fully hydrated and that was not the cause. I stayed two nights in the hospital and was given steroid shots in the event I had to deliver early. The bed was terribly uncomfortable and I could not sleep very well. However, I had the chance to laugh like I had not done in months by watching the film There’s Something About Mary. Laughter is healing.

I had two special visitors in town during this time: my Aunt Armida (aka as Tante) and Aunt Cris (aka as Tia). They came to help us when my Mom went home for a visit. And, the plan was to transform our guest bedroom to a little girl’s room during their stay. They would play a big part in the birth story.

My plan for July 30, 2012 was to go downtown for my 8:00 AM ultrasound with Aunt Armida. My Mom and Aunt Cris were going to start painting. Markus went to work and Kai went to school. I was so confident that everything was going to be better that I left the house with only my purse and only one bar left on my cell phone. I awoke early at 5:00 AM and drank lots of water, thinking it would increase my amniotic fluid. The ultrasound showed that my amniotic fluid was even lower than before and the doctors said it was no longer safe for our little girl to be inside of me. Deep down, I knew this to be true, especially as I had felt fewer movements in recent days. For all that we had been through together; I did not want to risk losing her now.

I was a bit apprehensive of what lay ahead in the operating room, but there was little time to dwell about it. All in all, I felt at peace. I attribute this well-being to all the love and support we received since the diagnosis. Everyone’s well wishes have carried me through the darkest and most unpredictable moments of this journey. Markus canceled the rest of his appointments to hurry to the hospital. And, my Mom and Aunt Cris finished up painting to do the same.

Similar to the Vanderbilt experience, it was a full audience in the operating room. Markus joined me this time. Since I was under general anesthesia with Kai’s birth, I did not know what to expect for this cesarean section. I just knew that they planned to cut me vertically, using the same fetal surgery incision from almost eleven weeks prior. IU Health University Hospital is a teaching hospital. I learned later that a lot of people were excited about this birth. I suspect because it was a teachable moment that does not come around very often. Doctors David Schnee and Frank Schubert led the surgery. Our little girl came into the world with a very soft cry. It happened so quickly and she was whisked immediately by the neonatologists that Doctor Schnee did not even know the gender of the child he had just delivered. Markus only saw a glimpse of her. With the cloth screen in front of me, I saw nothing and was told nothing. I presumed everything was okay, but really did not know. And, I was afraid to ask. It felt like an unbearably long time to close me up. Thankfully, the anesthesiologists gave me something at just the right time. After a shot of something, I was feeling really, really good!

I was moved to a recovery room. It was then when I got to see my little girl for the first time. It was love at first sight. I saw her for about a minute or so in her incubator as they had to rush her to Riley Hospital for Children for her care as a premature infant. I inquired about my Mom and learned that no one had briefed her about the birth. I told Markus to get her and encouraged both of them to follow the baby as they routed her to Riley. So while I recovered, I felt at ease knowing that my children were in good hands. Aunt Armida and Aunt Cris had left earlier to pick up Kai from school and put him to bed while my Mom and Markus watched over the newest member of our family.

Though I was recovering from major surgery, I was determined to get out of bed as soon as possible. I wanted to be close to my daughter and learn more about her condition. My goal was accomplished. Later that night, we got to hold hands. If I had any pain at that time, I do not remember it. All of those feelings just faded away. I had a new mission. I was now a mother of two children who needed me to be there for them.

It took us some time to finalize a name for our daughter. It was not until after she was born did we decide on her name. Sister Barbara from our church came to visit me almost weekly while I was on bed rest. I had the pleasure to listen and learn from her. Interestingly, she taught religion at the high school that my Mom and all of her sisters attended in California. We talked about a lot of things during her visits, but we never spoke of her religious name. Well, it turns out that our Alexa Marie is the religious name of Sister Barbara! What are the chances of that happening?

Wednesday, June 20, 2012

"During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."

Footprints in the Sand (Author Unknown)

If I reflect on what has transpired these last couple of months, it comforts me that my family and I are not alone.

Thank you Lord;Thank you Family;Thank you Friends; and,Thank you to the New Faces we have met along the way during this Journey.

Early January 2012 we found that we were expecting yet another miracle, due September 14, 2012. Our first miracle was born September 1, 2010. I love being a mother to Kai. It is something I knew I could do again if given the opportunity.

A much desired pregnancy had materialized! What we didn't know then, but what we know now, this new miracle is awakening us to a new normal. The pregnancy had been uneventful until the 19 week ultrasound. Then, everything changed on April 20, 2012. This was the day our baby was diagnosed with spina bifida. It took me several hours to absorb the news. I couldn't even shed a tear in the beginning. It was a long and sleepless night. The tears came later and were plentiful. Would crying in parking lots become the new normal?

I had been taking vitamins for years. I love my vegetables, fruits, fortified pasta and fish. How could this be possible? I didn't even know what spina bifida was, let alone know how to say and spell out the form our baby had, Myelomeningocele.

We were given our options. But who wants options? Not I for one! Never did I want to be given the option of whether to continue a much wanted pregnancy. I feel that this has to be a parent's worst nightmare.

One option presented to us was fetal surgery. A surgery that had become clinical in 2011 as a result of the early conclusion of the MOMS trial (http://en.wikipedia.org/wiki/MOMS_Trial). To me, the families who partipated in this trial are heroes.

A week after the diagnosis, Markus and I went to Nashville, Tennessee to meet the Vanderbilt team to discuss the baby's condition and to find out if we qualified for fetal surgery. We qualified. Should we proceed with fetal surgery? There are clear risks to both mother and unborn child. Again, a heart wrenching decision to make. The nightmare continued with this decision making process. And, time was of the essence. I was 20 weeks pregnant and fetal surgery eligibility ended at 25 weeks 6 days.

Dr. Kelly Bennett, the maternal/fetal specialist who performs the maternal portion of the surgery at Vanderbilt, gave us some good advice. Whatever road we chose to take, we can't look back. There is no right decision.

Typically, I enjoy listening to music in the car. Driving to Nashville and returning to Indianapolis was quiet. I suppose there was too much on our minds to turn on the radio dial.

In the end, Markus and I decided that if this surgery could help our baby's outcome, then we should do it. There are no guarantees. But, at least we can say, we tried to provide what we thought was best at that time. Again, no looking back, only forward.

Surgery was set for May 15, 2012. My parents, Markus, Kai and I traveled to Nashville the day before for my pre-op appointment. The unknown is scary. What I learned through this unique experience is that nothing is certain. The night before surgery as I lay down with Kai to read to him, my words came out slower and softer until I couldn't stop the tears from falling. I believe this was the first time I broke down in front of Kai. Such a sweet little boy. He laid his head against my heart and we stayed in that position until he fell asleep. I whispered, "Please God, let me continue being a mom to Kai." That was my one wish.

On May 15, 2012, we woke up before the crack of dawn to be at hospital on time. My dad, Markus and I got situated at the hospital while Kai continued to sleep in the care of my mom. A multitude of specialists streamed in the room and I signed a lot of consent forms. Then, I must have gotten emotional, so I was given something to relax. The kindess of strangers. I had mentioned to the anesthesiologist assistant that I didn't realize how difficult pregnancy can be. He looked at me with gentle eyes and took my hand and said, "I know, life is not fair." Comforting words. Life is not always fair. We just need to roll with the punches and do the best we can.

"Love you dad. Love you Markus. Bye." I was then rolled into the operating room. Surreal. The operating room was filled with doctors, assistants, nurses, etc. I didn't have the chance to count everyone present, but I estimate there must have been about 10 to 15 people in the room. The last thing I remember was getting moved onto the table and being given an epidural or spinal block. My memory stops at that point.

Mary Dabrowiak, fetal surgery coordinator and nurse, provided Markus with updates during the surgery. The doctors were pleased with the surgery. Mary Dabrowiak said baby and me did well. Our heartbeats were stable during the operation. I remember waking up as they wheeled me out of the operating room. I felt like I had been in a deep, pleasant dream. I wish I knew what I dreamt about because I felt so happy and peaceful when I woke up.

I remember being so hungry and thirsty when I first woke up, but I wasn't allowed to drink or eat anything. Since I was still numb from the waist below and had pain medications intravenously, I actually didn't feel much pain in the beginning. I think I was more emotionally spent than anything. I was well taken care of. The nurses and doctors kept close watch on me and everyone commented how well baby and me were doing. The next evening, I was transferred to a different room, where I would spend the remainder of my stay.

In total, I spent seven nights in the hospital. My room was next to the helicopter pad. As I lay in my bed and I could hear the helicopters arrive and leave, I kept thinking of how many families were impacted with each incident. Reinforced in me to cherish each day. Never know what tomorrow brings. Seeing my family each day was my highlight. I also had fun selecting my meals. I thought the hospital food was quite good. Yes, there were days when I didn't feel as well. When I found out I was taking vicodin, I concluded the drug was making me more sick than the pain, so I asked for something else to reduce the pain. My room was located on the labor and delivery floor. The nursery was down the hall. When I had the energy to walk and peek through the windows, my heart melted when I saw the healthy newborns. This is when the emotional pain hit me more than any physical pain. The sadness, knowng that our baby would face more challenges than a typical child. I reminded myself that I need to stay strong for our baby and be a positive force. No time to get weepy. Probably easier said than done, but it is still a goal of mine.

One real and major risk with fetal surgery is prematurity. Hence, why I am now on strict bed rest for the remainder of the pregnancy. I am allowed to take showers and eat meals at the table. My mom relocated to Indianapolis to take care of me and the family. She has been a blessing. We could not have had this procedure without her help. My weekly outing comprises of a visit to the doctor. That is how I plan to spend my summer, relaxing and preparing for this new journey. There is a still a lot of unknown. We are taking one day at a time and enjoying the beauty that life has to offer.

This Friday marks 28 weeks, our first milestone.

PS - Our baby is a little girl. At first I didn't want to know the gender of the baby, but I ended up peeking in the envelope after we found out about her condition. And the amniocentesis later confirmed it. Again, from the bottom of our hearts, thank you for the showering of love and support.